The system is the problem. Miri Lyons opens up about being stretched between work and caregiving.

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Miri Lyons is a 36 year old family caregiver and in-home care worker from Boothbay Harbor, Maine. Miri has oriented her entire life around care. But like most people caregiving and raising a family, she’s stretched thin. Here, she talks about how her job has actually made it more difficult to care for her family and how homecare would make all the difference in helping make ends meet.

“Recently I finally quit because I couldn’t support my own family’s care needs making less than $30,000 a year. And that was while working three jobs! Until a few months ago, I worked as a full-time caregiver, a part-time caregiver, and as a Zumba instructor. After years of struggling to make ends meet, I had to file for bankruptcy. Receiving between only $10-12.50/hour, coupled with the cost of healthcare, made it impossible for me to have enough for my family “

The Homecare for All initiative on the Maine ballot today, Voting Day, would change all that.

Miri Lyons

I’ve been a caregiver, both for my family and as a home care worker, for my whole life. Caring for others is a big part of my identity: it shaped my childhood and it is shaping me as a parent today. I had to leave my job as a home care worker a few months ago because I’m not able to make ends meet, which breaks my heart. But the Homecare for All campaign is giving me hope.

I started caregiving much earlier than I should have. When I was four, I was taking care of my two-year-old sister. Throughout our childhood, I had to make sure my sister got up, got dressed, and got to school. Eventually, I had to take care of my mother as well, when her mental and physical illnesses prevented her from working and functioning in society independently. When I finally decided to go to college in my late 20’s, my mother did not receive any homecare other than what my stepdad could provide because both of my siblings lived in other states. She passed away less than 18 months after I moved out of state. I can’t help but feel responsible since her rapid decline began only after I was no longer there to help care for her.

Now, I have a ten-year-old stepdaughter who is physically, emotionally, and cognitively impaired, and I have a son who is four. My husband and I take care of my stepdaughter four days a week, when she is not with her mother. She is currently on a huge array of medications, but they aren’t helping her anymore – and she can’t get off them without a 30-day hospital stay due to withdrawal symptoms, but neither my husband, myself, nor her mother can take that much time off to be with her. If we had a program like Homecare for All, one of us could take time off from work to stay with her in the hospital. Not only would it help us afford to care for our daughter, it could help save her life.

Sometimes when people think about caregiving, they see themselves on one side or the other – but I’ve been on about every side you can imagine. As a care worker, I started my first job at 22. I became a part of the family I took care and loved the connection I made with them, and eventually others. You can’t help it. I now have relationships not only with the people I’ve taken care of, but also their sons, nieces, and grandchildren. I worked so hard and sometimes I felt like I was giving and giving and giving and not getting much in return. But the people I was taking care of weren’t the problem; the system was.

Recently I finally quit because I couldn’t support my own family’s care needs making less than $30,000 a year. And that was while working three jobs! Until a few months ago, I worked as a full-time caregiver, a part-time caregiver, and as a Zumba instructor. After years of struggling to make ends meet, I had to file for bankruptcy. Receiving between only $10-12.50/hour, coupled with the cost of healthcare, made it impossible for me to have enough for my family.

While I was working, I hardly ever saw them, and I still wondered if I could put off that power bill just a few more weeks and or if I could buy that one more gallon of milk. I was making payments on two car loans, one on the car that died before I could finish paying it off, and one for the car that was required for my caregiving job so that I could drive between clients.

Making the decision to leave my homecare job – my passion – has had heavy repercussions. My sweet 90-year-old friend and client for the last 3 years was unable to replace the hours I spent with her, and as a direct result, she had to move into a nursing home. This is another reason why I am working so hard to make this home care initiative a reality. I never want another homecare worker to go through what I’m going through, or feel the personal sense of guilt and responsibility that I continue to carry. Making home care a priority, and making the workforce stronger by offering real benefits and competitive wages would mean that my agency would have had the staff to step in in my absence. The woman I cared for would have been able to stay in her home and remain near her friends and family.

If we had Homecare for All in Maine, it would have changed everything for me. A central component of the bill is that it would provide mandatory $15/hour pay for all homecare workers including benefits, sick time, insurance, and paid time off. Universal Homecare would have meant that I would not have had to quit my caregiving job to work at a doctor’s office, where I am making a higher hourly wage. It would have made a difference for me and my family, too, but also for my clients who I could have continued to work with. Until Maine has homecare, I fear people will continue to be put into nursing homes due to the lack of qualified, well-paid homecare workers.

On the other end, Homecare for All would help my family care for our daughter. Her condition might not be as bad at it is right now if one of us been able to afford devoting 100% of our time to her care. This is why I’m doing everything I can to expand access to homecare for Maine families like mine. This legislation has a provision that would supply a $100/day stipend to family caregivers that have to take time off or leave their job to care for a loved one. That would mean receiving almost $10,000 more per year than my salary as a paid caregiver. It would completely alleviate the financial burden we are under and would open up endless opportunities for our family to seek the care that our daughter desperately needs.

We need to change the culture of paid and family caregiving. We as a society should take responsibility and regain the “it takes a community” mentality that our society has lost. If I could say anything to paid or family caregivers it would be, “You are not alone — this isn’t working but let’s unite to fix it. The time for the luxury of not doing anything is gone. If you don’t have time right now to start affecting change you never will. Not having time is not an excuse.”

Follow the stories and experiences of Miri and others and join in the conversations about how we create community and break the isolation of caregivers on our Facebook page and on Twitter using the hashtags #WeKnowYouCare and #NationalCaregiversMonth.

November 1 — Leighann Gillis
November 2 — Claire Unsinn
November 3 — Lee Giles
November 4 — Skip Worchester
November 5 — Debbie Borque

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